I entered the CUNY SPS M.A. in Disability Studies Program with the hope of discovering a silver bullet to ensure society’s inclusion of people with disabilities. I am so pleased to have perhaps found three bullets: Digital storytelling, self-advocacy, and a theory presented in 1985: the Human Variation Model of disability. These bullets will shape my strategy and influence my tactics as a university lecturer.

As I write this Program Reflection I am also finalizing my part of the co-presentation “Empowering Individuals with Disabilities for Self-Advocacy through the Best-of-the-Best of the Disability Film Media” to NYSARC, the state body representing and serving intellectually disabled people. There will be a twist. Because of my partnering with local service agencies, we will cap the discussion of existing big budget films with reference to social media and accessible technology enabling people with disabilities to inexpensively digitally create and share their own stories.

Beth Haller’s “Disability in Mass Media” course certainly provided me with fuel to discuss the power of film, from the telethon controversy to Hollywood entertainment. But it is Amanda Baggs’s digital story “In My Language,” where Baggs first “speaks” in her language of sounds and then speaks via closed captioning and, most probably, a Dynavox, that most affected me. We can all communicate meaningfully.

Digital storytelling contributes important voices to the disability conversation. In addition, creating and sharing personal digital stories is an excellent method for communication among people with disability. If isolated in a tiny hamlet or an apartment high above the city streets, verbal or not, mobile or not, technology allows all people to communicate with friends, colleagues and people to be met. This breaking of barriers provides opportunity to show that living with a disability is not a tragedy, and as Freud professed, that all people want work and love. 

But media is not the only topic I will be sharing with my students, colleagues, neighbors and strangers who might become acquaintances if not friends and advocates. Because of the immense information I have gathered during the Program, I intend to increase availability of self-advocate platforms within the university setting.

I learned about the effectiveness of self-advocating when witnessing self-advocates from SANYS (Self-Advocates of NYS) presenting in Paige Ingalls’ “Embodiment and Disability” as well in the classes I teach with advocates from UCP of NYC, and listening to classmates who have disabilities. My Developing Assistive Technology graduate students have also been enlightened and to risk cliché, transformed, by self-advocates served by HeartShare Human Services of New York, a nonprofit human services agency improving the lives of people with intellectual disabilities since 1914.

I not only use the classroom to “spread the word.” This past summer, my university was greatly pleased to provide exhibition space for ArtShare by HeartShare and this fall we conducted a photography workshop for HeartShare users.

I am now not just a sibling of a person with a disability. I am a sibling of a person with a disability and knowledgeable about disability history; disability life cycle; disability diversity; disability rights and justice; impairment of the brain and of the body. I am a sibling of a person with a disability and trained to academically research an issue so as to establish and support arguments that further the inclusion in society of all human beings. I have learned that it is not the medical model of disability that will mix members of society into a potent force, but the social/civil rights/human variation models.

I firmly believe that we are all variations on the theme of being human. As more and more people accept that disability might visit them one day in the form of disease, or accident, or aging, universal design will become more common. We just might need that door to have not a knob but a lever; we just might need a device to help open a jar; we just might need a ramp to enter the opera. I see the stigma of disability disappearing and all differences accepted as typical. The term "disability" will disappear.

I recently attended the British transferred production to Broadway of “The Curious Incident of the Dog in the Night-Time,” a novel I have often assigned First-year writing students. It shows the development of an autistic boy while he searches for the murderer of a neighbor’s dog. How wonderful to see a play about autism on main stage theatre, but how sad to hear a professional theatre critic appearing on a local university TV station say, “Who wants to see a play about autism?” Certainly not he; he hadn’t seen it. But how many people had he influenced with that deprecating remark? And how sad to see the play directed so that Christopher’s (the main character) teacher questions his future independence, which is not what the text shows. At least that is what I took away from the production, which was the reason I sent a letter to the production stage manager asking if perhaps the director had an intention different from what I had inferred. The Associate Director, the person responsible for keeping the show in shape, reached out to me and reminded me that they can only pose the question. In addition, no one can be certain of success, which makes Chris typical. But the sobering fact is that 70% of people with disabilities are unemployed. I understood that my concern was unnecessary—people see what they want to see, and those who want to dismiss disabled people will dismiss disabled people. We can only remind them that "they" are "us."

With my training, I am humbled by what I don’t know. But this realization is a small matter because I know where to find what I need to know.  I have a network of disability advocates and also the library! Being humble is to my advantage: I am open to all ideas. But they just better be able to pass the Professor Julie Maybee test for support: “Where is your evidence!” They just better align with the local and national laws discussed by Professor Jaclyn Okin-Barney. They better fit in with Professor Neil Harbus’s presentation of Sam Tsemberis’s evidence-based practice of Housing First, and the received wisdom from Professor Justine Pawlukewicz’s encouraged visit to an AL-Anon’s Family Group beginner’s meeting.

A perplexing issue that has appeared to me over the course of my semesters with the Program is terminology: People-first or Disability-first language? The following is part of my post-Disability Law and Policy course e-discussion with Professor Okin-Barney, which was natural because the course had been 100% online:    

“If we must label ourselves, and people are always trying to pigeonhole others, I think we should celebrate who we are. This happened with "Black is Beautiful." I think we can eliminate a term's stigma by owning the term that had established the stigma. In this case, it's all about educating those temporarily without disability. ‘Crip’ is used among  disabled people. ‘Chair user’ among those using wheelchairs. Nondisabled are not yet permitted to use those terms, and maybe never should—I think if one does not live the experience, one cannot share the bond or understand the experience. But with the empowerment of disabled people comes their rejection of their possibly secret acceptance of ableism. And with this power comes the forcefulness to let nondisabled human beings know that there are different ways of living.

It is sad that we must remind others that we are all human. But I think this need can and will recede as the disabled population becomes more and more visible. And as aging baby boomers add to the clamor seeking accessibility.

Coincidentally, I'm reading Simi Linton's book chapter REASSIGNING MEANING, which greatly informs our discussion. She writes that in the 70’s ‘pwds’ was used ‘to maintain disability as a characteristic of the individual, as opposed to the defining variable’ and beginning in the 90’s (surprise to me) ‘disabled people’ has been used: ‘Rather than maintaining disability as a secondary characteristic, disabled has become a marker of the identity that the individual and group wish to highlight and call attention to.’ (From Simi Linton, Claiming Disability: Knowledge and Identity. (New York: New York University Press, 1998), pp. 8-17.) or

http://www.disabilitymuseum.org/dhm/edu/essay.html?id=21

I was at the Sprout film fest this past weekend—the question of disability first or people first language was posed to an autistic filmmaker. He thought autism defined him; it was his life. He therefore preferred disability first but suggested that it was up to the individual. And maybe that’s where it is at for now.

I think with self-advocacy, society and pwds are placed on the road toward embracing disability first language.  I think more and more individuals will claim the terminology that for so long had been hurtful and considered demeaning.  And at that point, disability first language will become typical. 

We are just not there yet.

Thanks for helping me figure this one out.”

The CUNY SPS M.A. in Disability Studies Program has changed me. Well, at least I am questioning that of which I had once been so certain. Abortion and assisted suicide were once easy issues for me—personal choice, ‘nuf said. But personal choice influences societal attitude. It is commonly the other way around. But enough personal choices can make a tidal wave of change. We are so technologically advanced; how will we use our newly achieved information, such as genome mapping? Will we abort a fetus because it is not perfect? And what is “perfect”? Or will we understand that no child is perfect and terminate the use of abortion? I don’t know. Aborting for rape, or the mother’s health, or financial reasons make sense to me, but not because the baby may develop a disease in forty years; not if the baby may have dark instead of light hair; not if the baby will be only of average height. After all, early intervention is enabling better lives for people with Down syndrome, yet fetuses with an extra chromosome are today often aborted. Are we going for the picture perfect person rather than the person with a compassionate soul? Look out Brave New World!

And then we have the right to die. Whose lives are worth living? Why is the medical profession notorious for thinking people with disabilities are not thoroughly enjoying their lives? My neighbor who has ALS has recently reopened his patent law office, working for the Chamber of Commerce and doing pro bono work. It is to him that I will direct my Developing Assistive Technology graduate students when the time arises. It costs $3,000 every week to accommodate his medical and physical needs. People like my neighbor might feel pressure to terminate their lives because of expense or family inconvenience. Assisted suicide is not a personal issue—it is a societal attitudinal issue: whose life is worthy of living? Not Dead Yet is a disability rights group opposing “discrimination against old, ill and disabled people.” Ironically, we will, hopefully, all become old. We all will at times be ill, and we can all count on the possibility of becoming disabled because of accident or inherited disease. Not so many years ago, I would show my students Mike Wallace’s 1998 60 Minutes interview with Dr. Kevorkian and dismiss the counter-argument that Kevorkian was involved in “medicalized killing.” I had not considered the absence of a social worker or psychotherapist consult or a visit from an individual living with the person’s condition.

Fortunately, for every Hollywood entertainment film devaluing life with disability, we are seeing presentation of the opposite: think Million Dollar Baby and The Sessions.  In the former, a woman prizefighter seeks death upon becoming a paraplegic while in the latter, a man using an iron lung seeks a sexual surrogate to lose his virginity.

Before the CUNY SPS Program, I hadn’t looked at abortion or the right to die from the point of view of a disabled person. And now that I do, I worry. Until society understands that disability is not a tragedy, the right to choose, either abortion or suicide, needs to be closely examined on an individual basis with the individual’s input unhampered by societal pressure. As the salesman’s wife says at his gravesite in Arthur Miller’s Death of a Salesman, “Attention must be paid!”

Are abortion and assisted suicide the 21st Century’s Eugenics? The more opportunity we have to make each of us a replica of the other, the more dangerous it will be to be different or deemed “the other.” And without diversity we have what? Sameness. But isn’t it human to want to excel? Will not those who are the same find new parameters to gauge being the best?

The most difficult part of the CUNY SPS Disability Studies Program was the density of some of the academic writing. Even if I read a particular paragraph several times … slowly…I just couldn’t get it. This was unnerving—I’m a university lecturer; I’m a published writer; why don’t I get it? But as I became more confident of my progress within the Program, I realized that even in Disability Studies not all writers are clear. No names.

Now writing the final draft of this Program reflection, I have already returned from my NYSARC presentation. The handful of attendees was exuberant in its praise of the power of film, especially digital storytelling. But many of the conference attendees were attracted to the more practical presentations occurring concurrently: the emerging workforce; reducing ER admissions; creating competitive opportunities through social enterprise; and using position statements proactively. Hmmm—getting digital stories out there to show what disability is while also empowering the storytellers just might make all other presentations unnecessary: after all, don’t you think familiarity with disabilities will eliminate the differentness of disability?  Don’t you think we are all variations on the theme of being human? Do you agree that we all want work and love? I hope you do. Then you can come join me in the work I’ve got to do.

The End